Pages

Wednesday, February 22, 2012

Dr. Hecker Appointment - Watch, Wait, then Plan

I can't believe I am doing two posts back to back! It's been so long since I have done that! BUT with the Miracle post, the big appointment today, and all of the sweet responses to everything that has happened...I know that it was important to let you know what was said at the appointment with Dr. Hecker.


• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •


First of all, I want to say thank you. I want to thank you for your support, your love, and for believing in me.....most of all thank you for your PRAYERS! I know the Lord thanks you as well. No, I am not speaking for Him...but I KNOW in my heart, this is ALL a part of His plan. He has told me and shown me this...so for you to pray and support me through this journey that He and I are taking together...I know He will bless you for helping bring honor and glory to HIM!

I have known since I was 4 years old that the Lord had something big in my future and in my walk with Him. I have had my visions and dreams since that age and have always felt His presence so strongly since then. At times I get a look into what it is, but I never get the entire picture.

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

As most of you know from older posts, as a child I was healthy, but had strange/odd/freak signs and symptoms. From wearing knee braces on both legs, joint hyper-activity and pain, to weight loss, stomach pains, oh the list could go on and on. Like I said, the Lord told me that He was going to use me in a mighty way, not for myself, not for my glory, BUT for HIM...for HIS GLORY...for HIS KINGDOM! When I was younger, I didn't realize that all of the odd health issues would possibly connect, but as I got older He slowly began revealing to me that this sickness and disease is HIS plan. That from this is going to come something far beyond my comprehension.

People say "the Lord needs to heal you", "you need to have faith He is going to heal you and He will" "you need to pray harder", along with many other things. To that, I have to say FIRST, Lord DOESN'T need to do ANYTHING we want Him to! It is not about how much faith you have, how much you pray, how much you do this or that...it is about His plan and will for our life. If we understood everything in the Bible, understood His ways, thoughts, and all other theological things, then why would we need Him...we would know it all! That is what FAITH is...NOT knowing everything, yet still BELIEVING that He is there and He knows what He is doing!

As His word says is Isaiah 55:8, His thoughts are not ours, neither are His ways our ways...He then goes on in verse 9 to say that His thoughts and ways are GREATER than ours! Our trust and hope needs to lie in His hands....our worries and concerns need to be laid down at His feet!

Yes, at times, I cry to Him and ask Him to remove this cup...at times I say that IF it is HIS will, to please take me Home. We are flesh and this is normal...who wouldn't long to be with Him? Yet in my heart I know that this is His plan...that through this He wants me to be as Job, as Paul and the "thorn in his flesh", as He when He took the cross for us. We can be strong in and for Him, because HE was STRONG for us! People forget that yes, He was still God, but He was in a FLESH body...He suffered, He had pain, He shed tears, and He asked to have the cup removed. He will understand more than ANYONE ever could begin to!

 The thing is, as Christians...we have to show others, that even through the good times and the bad times, our GOD is THERE and He is GOOD! We have to show others, that the only way to make it through the trials and tribulations of this life is with HIM!

I get aggravated when people take 1 Corinthians 10:13 and paraphrase, saying "The Lord will not put more on you than you can handle". It bothers me how they word this paraphrase! It is NOT that at all! It is not our strength that gets us through trials/tribulations/temptations...things DO get too much for us...to hard...BUT IT IS with HIS STRENGTH, HIS MERCY, and HIS LOVE we CAN  handle ANYTHING and EVERYTHING! So when you think of 1 Corinthians 10:13 and you paraphrase...make sure to give HIM the glory and not us...tell them "Yes we will have more put on us than we can handle...BUT WITH HIM, we CAN handle it...our STRENGTH comes from HIM"

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

I am so sorry I am getting off on my preaching! I just feel His presence over me at times, and I can't shake it...I have to tell others what He tells me, I have to let everyone know that He is here, He loves us, and that if we YEARN for Him...if we HUNGER for His presence and His love....if we show and let Him know we NEED Him and want MORE of Him....He will INCREASE in YOU! Never settle with where you are in your relationship with Him! Always want Him more!

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •


Appointment  -  February  22,  2012  -  Dr. Hecker


• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •
    
Dr. Hecker has been the one doctor who has fought for me harder than anyone else. He is a Godly man and a man that see the truth of what is going on with my body and health. He knows that the exterior is a facade and that the interior is a mess. He never gives up on me and always end the appointment with "well if your case was easy, if this disease was easy, someone would have already found it...what you are dealing with is a mystery, so we have to take our time...but we will find out eventually with eliminating what is wrong"


My appointment was at 10:45, so I wasn't necessarily the happiest little girl this morning. It is hard for my body to get going...between the joints, the muscles, oh well...I well just say with my body...mornings are hard. The Lord gave me strength, and Andrew helped as much as he could.

We arrived, and I was so jittery to see Dr. Hecker. I was excited to see him, because two months was a long time for us not seeing one another. I was ready to talk to him about some more sign and symptom concerns, tell him about new meds, but MOSTLY about the Chemo increase. I knew that He was going to be very excited. Not excited about how much more serious this made my chemo treatments, or how severe the anaphylaxis and side effects would be, but excited that maybe after a few treatments my awful case MIGHT JUST respond better - rid me of many of my disease symptoms...or even better possibly a chance at going into Remission for ONCE!

We got called back and now I have to tattle on myself...I get tired of all of my doctors harping on me about my weight...so I wore the thickest/heaviest pair of leggings I could find, the heaviest shoes I had, and a thick thick sweater dress, with my knee length pea-coat! Oh and add more jewelry than I would normally wear! I had a GOOOOOOD 7-10 pounds on me....BUT I did it :) I weighted 116...so I added my clothes up real well! :) My nurse kind of laughed at me...I was going to hold my purse too, but I knew she wouldn't let that one slide! So whoop whoop!

Dr. Hecker came in, and I think the room was filled with SMILES! It was so sweet because he gave me the biggest, most firm hand shake I have ever received, and it just lasted and lasted as we smiled at one another! So I began jittering away and he just smiled and chuckled at me! He told me I looked good and I gave him the evil eye. So...I will give you the list I gave him that I wanted to go over...our options, what he needed to know...our catch up list (with treatments your memory gets a little fried so I have to write stuff down now or I will forget)

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*Remind Dr. Hecker about my severe migraines and severe headaches.*

    - see if I would be able to take migraine medicine
      (with being on so many medications, you sometimes can't take other medications because they don't go well together, so that stinks and you have to see if certain meds will be compatible with your disease and other medications)

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*Tell Dr. Hecker about how the cold sweats/hot flashes have gotten more serious.*

    - My body during this hypersensitive times is getting worse. When I have the cold sweats and I get in a HOT shower to try and get my homeostasis in balance, the HOT WATER literally will go NUMB on my back...I can feel the water, but not the temperature....its very scary and not a good feeling.
    - Also...about the time when I turned on SCALDING HOT water (mom felt it after)...I didn't know and washed my hands under it, not feeling it was scalding. After I washed them my hands were bright red and puffed up with slight burn feeling. Mom then had me cut water back on to where I had it and she couldn't even place finger under.

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*Ask about Mayo and what he was able to tell them/do?*

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*Tell him about my medicine to make me eat.*

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •


*Show him the salmon skin rashes on my arms.*
  
     - most of you have seen my Erythema Nodosum picture - which is a SEVER complication symptom from Crohn's and a few other Autoimmune Disease, but it only shows in Chronic and Severe cases...well the rash on my arms is not pustules not ulcers...they itch slightly but are like little red spots clumped together...almost like a little petechiae round cluster. (You can google petechiae to see what it looks like) He has already seen my chest inflamed in this rash...I look like a red chested monster!

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*Ask him about Adult Onset Stills Disease.*
  
      - On my last post I wrote about the Mystery Diagnosis case. She had this disease. Dr. Hecker and I have said that this is a big candidate for the other disease that is killing my body. The thing about this disease is that there is NO TEST OR PROCEDURE to diagnose it.

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*Tell him about Remicade Treatment Dosage Increase. (From 5 mg/kg TO 10 mg/kg)*

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

Now I will go over the answers that he gave me for the topics - and yes we had a good hour long or little over hour appointment - and it was an amazing appointment because....just because the Lord is good and Dr. Hecker is a Believer

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*Migraine Topic*  -  This was a bummer. He said that there were many migraine medicines out there, but the reason he never gave me a prescription for one is that the migraine medications and pain medications do not mix. If anything they are like oil and water. He said to take the migraine medicine I would literally have to be off of all and any type of pain medication and that would NOT happen. He said with as much pain as my body was taking daily, the pain medication is the number one thing I need. It actually sometimes can even cause migraines. I told him that when they are bad enough I take my pain medication because I literally go into these fits where I just jerk my head, hit it, cry...I go into a terrible state with them, so I have to take something. He said that was ok, but that pain medication actually doesn't take them away...it just weans them off, but that I have to do what I have to do. HE DID however have an option to try. He said that when I think I have a migraine coming on....immediately take one of my Phengergans. He said that the dopamine in the Phenergan would do a reuptake and possibly help and stop the migraine! :) Pretty cool huh? so for all you migrainers out there....take a Phenergan (anti-emetic (which means you take for nausea and it is supposed to stop you from vomitting))

 • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •


*Numbness that goes with Cold-Sweats/Hot Flashes*  -  He told me that he didn't like this and that it really scared him because I could hurt my self badly and could put my self into serious danger not being able to detect temperatures at times. He said that when we did the nerve study, the nerves reacted...but then he added that it was unbelievable that he stuck a 6" needle into my muscles from my ankle to my arm and I didn't flinch, have pain, move, NOTHING - and no...I had no pain meds that day, NO sedation, NOTHING! and you all know I'm skinny...no meat on my arms...imagine a needle sticking into dep muscle in your arm...crazy huh? He then went on to say that he still believes with as severe as my Autoimmune Disease is and the fact that there IS another one...I have some type of neuropathy going on. He said that is something that will take time to figure out...but we know there at least is a neuropathy problem.

What is neuropathy?  Neuropathy is a collection of disorders that occurs when nerves of the peripheral nervous system (the part of the nervous system outside of the brain and spinal cord) are damaged. Neuropathy can affect nerves that control muscle movement (motor nerves) and those that detect sensations such as coldness or pain (sensory nerves). In some cases - autonomic neuropathy - it can affect internal organs, such as the heart, blood vessels, bladder, or intestines.

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*Mayo Clinic* -  this part was a little sad, because when we saw one another last, I had wrote in my post that he was going to call them, tell them all about me, and try to get it set up where they would not run tests for months, but get me in there, let me stay there, and do everything within a few weeks so we wouldn't have to rent a place or stay in hotel...that way I could stay in hospital and mom could stay in hospital with me. Well...bad news is he said that when he tried calling, he just can't talk to a doctor. He said they said that I had to make myself a patient there. Then after I admit as a patient to them on the phone or online, THEN he could talk to the doctor and tell him everything about me. Again I told him the only way I was going is if he called and VERIFIED that I am not crazy and tell them he has seen all of my freaky stuff. I was like "Dr. Hecker...just please tell them that I am messed up and that it is a really freaky case"! He started laughing and said "Allison, I think if you show up at the Mayo Clinic, they already know that"! I just laughed...oooooh Dr. Hecker!

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •


*Medicine to make me eat* -  Not much to talk about. He just looked like he hated that my health has gotten to the point that its that severe.

 • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •


*Salmon rash* -  Again...not much to say...Im just a messed up case! He did say that WE were GOING to be on Mystery Diagnosis one day (he knows I get mad at that show because everyone gets fixed and not me LOL)! and then I was like....well you HAVE to diagnose me first with my other junk! It was just more laughing and trying to be positive!

 • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*Adult Onset Still Disease*  -  He agreed that it is still a big candidate for my other disease, especially the fact that I have EVERY sign and symptom, there is NO CERTAIN test or procedure to diagnose it...and it just goes together....plus I am right in the age range for when the first peak of the disease starts/happens. I will tell a little more about this below.

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

WHAT WE HAVE BEEN WAITING FOR!

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

*The Remicade Topic* - I told him about being hospitalized in January. How I was so dehydrated that they could not even get blood out of my MEDIPORT - he said he believed it. I told him about seeing Rodriguez and continuing to fight over a year now to get the Remicade increased. He already knew from before (me telling him) that Rodriguez said it was the insurance. Dr. Hecker along with all of my other doctors has been wanting the Remicade increased for a while now....just because it is our last hope with all of this as a treamtent option.

So...I tell him everything as I told you in the post, and it was like this big wave of excitement over him. He was so happy. He was like Allison, this is great! He said this is a PERFECT thing to be happening right now. He then said that if I have Adult Onset Stills Disease, it's treatment is the Chemo also (the Remicade treatments). He was concerned about me being on that much and worried about me and my next treatment. I don't think I can put into words how serious these treamtents are...it isn't putting a bag of saline up and running it. It is potent...if you look up...it is a type of chemotherapy...and the risks with that are big...the recovery is hard. That was his big thing...he was worried about me and my recovery...he was worried about if my nurse would watch me close, if she would know how serious this was....I told him Mrs. Rene was at one time a Chemo nurse so I'm sure she knew the importance and seriousness of everything. So then he gets excited again...he was like this is what we needed....he then found out that my next treatment was March 14...so he told me to call him in April and tell him everything that I'm feeling...let him what things were worse, what things were better, if there was a health change...EVERYTHING! He was like, Allison this will help us so much on your case. If it is most of your Crohn's that is doing this, then hopefully we will find out...if you don't get better with the maxed out does...then we will know we need to be getting to the Mayo fast. He then said if I noticed it helped some to...that we could maybe start getting diagnosed with the Stills since its only treatment is the few options with Crohn's and since I'm at my last that would be the Remicade....so two disease that need the same thing. Lord, if it doesn't work, I'm going to need some BIG donations to the CCFA .... just not for a cure, but to find more options for people that are in my shoes.

• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •

So....a lot in one appointment. Some worries and concerns and then some excitement! it is so pitiful though when I get up to walk out...we give him hugs and then when we leave the paper on the table is soak and wet from me sitting on it...cold-sweats...I mean the paper is pretty much deteriorated from me sititng there...quit embarrassing, but he thinks it is unbelievable. When he performed some neuro tests on me, he had to check hand eye coordination and when he touched my hands they were like ice but were literally dripping wet! I guess it's like having a fish as a patient, LOL!

This post was an extremely long post, but I want to document as much as I can, and I want those that care to know as much as they want...I want you all to feel as though you are at the appointment so that you can truly experience this journey with the Lord and I! I know that was a reason for me starting this blog...the Lord and I were talking and I knew I wanted a way to put all my emotions into a physical way....I take everything and put it all into words...so it is a release. Most importantly...the Lord kept telling me....I want you to tell OUR story....so that is when I began the blog. I'm not sure if all of you know how to work a blog, but if you want to know the beginning of our story...scroll down my blog and to the right side of the page you will see BLOG ARCHIVE - you can click by the year and when you click the year it will show months....of course you can guess if you want to see how everything began you go to the eldest year and start with the eldest month. (not sure if that was correct grammar and I'm nuts about that stuff so excuse it...also excuse this entire thing, because after my appointment I got very sick and have phenergans mixed with percocets to fix a lot of pain and a lot of nausea)

Again, I love you all very much...your support motivates me, it encourages me, and it makes me fight that much harder! I will say it again, the Lord will bless you greatly for being there for one of His children He has called to the Battlefield for Him! To have so many of you read this and know my thoughts, feelings, emotions....I don't know...it helps...it helps that instead of just looking on the outside, you get to see what is really going on. God bless you all, you are prayed for, and loved so very much by me!


• • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • • •


Also, if yall ever have a question about something, or you want to know something a little deeper, just comment below...there is a box on my blog were you can post.....that way I can see it and answer. Always feel free to ask anything...I want you to know as much as you want!

Tuesday, February 21, 2012

My God NEVER Fails!

Before I talk about the facebook post, I have been wanting to post some pictures I had taken on my blog. Again, I write this blog for me...to release things, to get rid of some burdens, and for those that read - keep them updated.

So the pictures I am going to post...People always tell me "Oh you look so good" this and that, that and this. I know they mean it, but its hard when they say that and you don't feel it. Another thing is when people tell me my hair looks good, yet I know I have bald patches everywhere. So for myself to let it out...*can't believe I'm doing this*...I'm going to post four pictures...when I blow dry my hair (excuse me...when Andrew or my Mom does)...you can see the balding very badly since the hair little bit of hair I have is blowing around. While in the mirror with the blow dryer...I was like take a picture Allison... Post it, and let it out. Show others but most of all just post it so that you can let it out! So that is what I am doing!





The back of my head is not as bald as the front and sides of my head. I know this sounds odd, but sometimes I have so much pain in my scalp. You can actually feel pain where your hair follicles are...it is a burning sensations all over your scalp...and then the next day it will come out in patches. when I take a shower is when I am able to brush through my hair with my fingers and get rid of the fallen hair. Not the same amount comes out every day...some days barely any, some days a palm full.



Now for the news!

Facebook status: "for all that follow me and my health...I am overwhelmed right now to the point of tears! Thanks to my Mom and the Lord another miracle has happened! I am not healed...just know that something AMAZING happened! I will post a blog tonight so be on the look out and PLEASE read! I love Rodriguez again and so very much! Thank you Lord! I'm wanting remission for my wedding gift!! God is so GOOD!"


Now comes the time where I explain to you why I posted this! First off...I'm not sure that whoever reads this post, will have read the previous post on my blog! So for those of you that missed out on my last post and many posts before...here is a catch up....

A little about my last blog post:

"As many of you know....and as I have written a billion times before...the two blood tests that you can check to see if the Crohn's is in control or not is a Sed Rate and a C Reactive Protein. Like I have written before as well, these tests can be FALSE for Crohn's patients. You can be in a flare and the labs normal. Rodriguez had told us about this in the beginning. If I'm not mistaken also...when I had my colonoscopy and was all nasty inside and diagnosed with Crohn's...my labs were normal. But then again, my numbers have always been normal when it comes to those labs! What I'm trying to say is both of these labs with Crohn's can be very FALSE...so you can never judge where you are with your Crohn's by these two tests.

Well...the problem is we need these tests to be elevated so that we can get my treatments either 1. moved from 8 weeks to 6 weeks, or 2. changed from 5mg/kg to 10mg/kg, or 3. BOTH!

Now I will say that Rodriguez has been busting his butt to get my Remicade treatments increased and cut back, but insurance will NOT let him because they want to see labs!

Mom brought all of this up again to him and got emotional...she told him how Mrs. Sharon's son (people we know) literally almost died from the Crohn's (just never got better and kept getting worse - like myself) and finally his labs increased and they were able to change the treatments...since then he has been a new child! When his mom talks about it, it will make you cry. She literally thought she was going to see her child die...and then when the treatments changed, she said it was like night and day difference! He lives a normal life now! So mom truly believes if we change mine, I will get better! Rodriguez went over it with her again, and we all got frustrated!

He said, "I know she is sick, that she isn't better, that her Crohn's is not controlled, that her signs and symptoms show she is not better." He then said "and I'm the doctor knowing all of this...but it doesn't matter..." then he went on to say...The thing is you have your insurance people sitting behind computers looking at numbers wanting them to be elevated...if they are not then it's not good enough and they will not allow (or pass/ok) the doctor to change dosage or frequency." So then mom got upset at insurance!

After he left the room I just sat there and looked at mom. I was like you know what this is....a BIG vicious cycle! The infamous lines "You are very sick, oh wait, there is nothing we can do for you."


So all of that is from the previous post! Also in the previous post, I had asked all that read to PLEASE pray for my C-Reactive test and Sed-Rate test to be ABNORMAL so we could get the treatment (chemo) dosage raised from the 5mg/kg to 10mg/kg.


Well the other day, I was flipping through the channels and something told me to stop on Mystery Diagnosis. Of course I didn't want to, because I'm tired of seeing other people's long stories get figured out. Of course I am happy for these people, it's just hard for me to watch their happy ending, when my own story seems to just be the "never-ending" one. If anything I have learned from this disease/sickness... - I don't want ANYONE to suffer with a disease,, illness, disorder, sickness, etc...I don't want ANYONE to have to deal with pain and nausea daily, fatigue, restlessness, etc...

It hurts me right now that so many suffer in this world today. I want to be here with my family and friends, but after dealing with suffering like this for so long, it brings you to the point where you want to be in Heaven with your Savior...in your new glorified body.

So back to the show. I decided I would listen to this feeling. Low and behold it was a nurse...a nurse who had ALL the same signs and symptoms I have/had, all the same tests/procedures, many of the same specialists...it was unreal. In my head I was thinking, she definitely has Crohn's Disease along with another Autoimmune Disease. Next thing I know, Mom is watching, Dad is watching, and I'm getting emotional watching. I mean this lady on tv was telling what she felt physically, what she felt emotionally...and it was like watching myself.

The show ends with her having the diagnosis of Adult Onset Stills Disease - something my neurologist and I have talked about often. There is no test to diagnose this disease, so we still think this dx is a possibility. You literally diagnose the disease based off of clinical observations. Ready for the treatment option for AOSD? Just take a guess? I will give you a hint....it's a type of Chemo-therapy. REMICADE TREATMENTS! *bum bum bummmmmm*


So the show ends and I'm like WONDERFUL! Remicade! After my sarcasm and anger wore off, my brain started turning and thinking. Then the wheels turned faster and I thought *well if we can get Hecker to diagnose me with the AOSD and Rodriguez already has me diagnosed with Crohn's...maybe we could get the Remicade dosage increased. With both diseases needing this treatment you would think you would need to increase its dosage. Also, Dr. Rodriguez has been wanting it increased...so this could work!

So then Mom and I get into a conversation about my treatments, insurance, and Dr. Rod.  She finally asked, "Allison, do you think it would help if I called insurance and told them about you and your health...about how bad everything is, and how we NEED that 10mg/kg...MAYBE somehow it would help" I told her it wouldn't hurt, but didn't expect anything out of it. Surely if my doctor was calling and sending requests, and they weren't listening, what would make them want to listen to us.


Today - February 21, 2012

Well this morning I woke up. Little did I know what was going to happen today!

Mom had called insurance and had talked to them about my health and about my Remicade situation. Low and behold Insurance said THEY APPROVED the REMICADE INCREASE from 5MG/KG TO 10MG/KG and that this changed should have taken effect during THIS YEAR for sure.

Crazy! That means that I would have already had THREE CHEMOS with a HIGHER DOSAGE! so of course we are going....hmmm...what is going on?

Well Mom called Rodriguez's office and as always the front desk and nurses are idiots! (I don't mean this in an ugly way, just the God's honest truth). So mom talked to the nurse and explained what was going on. The nurse then typed up a message to send to Dr. Rodriguez and at the end wrote to call us. Well, no call from Rodriguez, but a call from the nurse again. This nurse had the NERVE to tell my mother that she told Dr. Rodriguez everything...that Dr. Rodriguez said the Remicade would not be increased til another COLONOSCOPY WAS PERFORMED!!?!

YOU ARE KIDDING ME! HOW MANY TIMES DO I NEED A TO BE STUCK UP MY BOWELS! I THINK I HAVE HAD ENOUGH! (that was my fun vent sentence :) )

That is when I got mad and grabbed the phone from Mom. I immediately let the Nurse know I was a Nurse and that I wasn't playing. That Rodriguez was on OUR side...that HE WANTED the Remicade dosage increased and had been fighting some time to get it changed! I also explained to her about my visits with him. (the post before) So...I tell the Nurse as nicely as I can that I don't want to talk to her...I want to talk to Dr. Rodriguez. She held on a little while longer and she started going through my file...she and I were jibber jabbering and immediately she went silent. I knew that she had found something. After she went silent she said...I am going to page Dr. Rodriguez and tell him to call...he will get back with you. *Phone click*

So.....the day drug on. Andrew and I went to look at land...I stuffed my face with Phenergan and Percocets from the nausea that has persisted for 4 days and the pain that is never ending.

Wait. Wait. Wait. That's what we were doing! That's what we all do when waiting for those return calls!

Andrew then decided that since we hadn't eaten all day (and I sure don't know when to eat because I have no urge), that we needed to go get something. So we go get some food and sit down. The phone rings and it is Mom.

Mom said "Dr. Rodriguez called. He informed me that he was not avoiding calling and was not wanting to do another colonoscopy...he was wanting to go back through your charts. He said that it literally took him that long to go through all of yours. He found where Insurance increased your Remicade in August of 2011! He didn't understand how it had gotten overlooked...and is trying to figure out where somebody failed/messed-up. He asked when your next treatment was....so I told him in a few weeks. He said that he would call Curascripts (the company that ships my chemo) and have EVERYTHING straightened out by your March treatment!"

I just started BAWLING....I couldn't even say the blessing over my food (nor could Andrew)! Andrew just held me and I cried...he teared up...and we just felt so very BLESSED!  Now sure, I don't know whether the 10 mg/kg will make a difference, but I have put so much faith in that it WILL! Now I have been telling you all that I am at my last option and I am with medications....when we raise this to the 10mg/kg...we will be at the end of every option for Remicade.

Now with the Chemo being increased that means the chemo will be more potent. This next treatment will be very rough on me and I will have more anaphylaxis than usual, but I am READY!

I asked yall to pray on my last post for abnormal test results....well we got even better! The Lord performed another miracle! You tell me how a doctor and ALL of his nurses miss a NEW ORDER APPROVAL from an INSURANCE company! MIRACLE! People talk about the Lord healing people, how that is a miracle....we have to look at everything around us! There are miracles all around us! He is STILL the God who PERFORMS MIRACLES!

I know for some of you reading, you may not understand why I am so overjoyed, overwhelmed, and humbled. Just know that when you are at the end up your rope with your health and you have one little option left and you are reaching at it with all of your heart.......well when you grab a hold of it....it is indescribable!

I know that with the dosage being increased, it makes my treatments that much more serious. I just can't help but think this may be it. This may be the one thing to stop the sweats, stop the nausea, stop the pain, make me "me" again! I have so much faith right now....it is definitely not a mustard seed...more like an avocado seed!

I cannot thank you all enough! Thank you for praying what to others may seem like an odd request. Thank you for reading and knowing where I am at. Thank you for your support and love!

Like I said...some people may not understand why I am happy to get my chemo increased....I guess in reality you don't have to understand. Just know that God is an Awesome God! He ALWAYS provides at the perfect time! I love you all and thank you from the bottom of my heart for all you do!

I am praying that with this increased dosage I get some remission time from Crohn's! We had thought that Remission was a no no word for me....I'm going to think that isn't so! :)

Ready for all that the Lord has in store! If it is that this dosage doesn't work, I will STILL TRUST in HIM! If it is that this dosage does work, watch out world...remission Alli is on the loose!